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You're Not Alone: How Mothers of Children Born with Rare Condition Comfort and Support Each Other on CarePages.com
Date:3/6/2008

Young Boston woman shares story of firstborn son's ordeal with omphalocele

CHICAGO, March 6 /PRNewswire/ -- "Something's wrong with your baby."

Words a pregnant woman dreads to hear. Especially when her doctor says that "something" is called an omphalocele, which means her baby will be born with some of his or her abdominal organs (e.g., liver and intestine) outside of the body protected by a membrane sac.

Sarah Doyle, 29, and her 32-year-old husband Mike received this news in December 2006 when she was 19 weeks pregnant. In March 2007, one month before her scheduled C-section, she started her CarePage for her son Aidan. She soon discovered a community of support for a harrowing ordeal, which finally is nearing its end.

"Before I knew it the site had 100 visitors and it's now over 300, and we've been overwhelmed by their kindness, encouragement and prayers," she says. "I also found other mothers of children with omphaloceles in the CarePages directory. My goal is to use CarePages and our email support group, Mothers of Omphaloceles (MOO), to help other parents understand their options and realize they're not alone."

Aidan was born April 11, 2007 and has spent his entire life on a ventilator in intensive care units, mostly at Children's Hospital Boston an affiliate of Harvard Medical School. Soon after his birth, doctors found that he actually had Pentalogy of Cantrell, an extremely rare birth defect (approximately 5 out of every 1 million births) that causes defects involving the diaphragm, abdominal wall, pericardium, heart and lower sternum.

"Aidan's heart fell through a hernia in his diaphragm, and ended up in his abdomen, covered only by skin. We could see it beating," says Sarah.

The Pentalogy of Cantrell defect is usually fatal, and Aidan had many close calls in the early months, including turning blue on several occasions. Sarah became quite knowledgeable about her son's birth defects, and began to realize
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